Mary’s Story

In Her Own Words (Age 12, living in Florida)

Everything started when I was bitten in a state park in Florida in May 2000. I was with my Mom and sister, who were also bitten. I still vaguely remember my Mom pulling a strange bug out of my neck. Things started to change after that trip. I would get tired going up the stairs and come home from school with headaches. We saw our pediatrician, who concluded that we didn’t have Lyme disease since we didn’t have the bull’s-eye rash, and, according to him, Florida was not endemic for this disease.

For some reason, my mom was getting sicker faster than we were. After being misdiagnosed by 3 doctors, she was finally diagnosed with Lyme disease and Ehrlichiosis.

Months later, as we were gradually getting sicker, my parents took us to New Haven, CT, where we saw a doctor who had treated several thousand kids with Lyme. He diagnosed us, and started treating us. By the following spring, I was running again during recess. Over the summer, after hearing about my progress, my LLMD told my parents that it was time to stop antibiotics.

Everything was just perfect until October of the year 2005. Soon after, we figured out I was relapsing because the stress of school brought out my symptoms again, causing me to need to go back on antibiotics. And just as before, I felt better. Of course, I still had the disease, but it wasn’t attacking my body as severely.

As of right now, January 2009, I am off of antibiotics again. I’m an eighth grader at a prep school. Once again, I’m feeling a little under the weather. And I’m sure that just as before, I’m going to need to start antibiotics AGAIN, but it is okay. I’ll do absolutely anything to get healthy. As I see countless people suffering from this disease, I have just recently thought of becoming a doctor. I want to help people that are having trouble with their uninformed local doctors.

Since I often stay at home resting, I have a lot of time to do some of the things I love: drawing in my sketch book, cooking crazy recipes and reading.

Like almost every single teenager I know who has Lyme, I have been harassed, annoyed, put down, and insulted by friends and teachers who don’t understand the disease at all. These people are ignorant and have no right to judge us, or assume that we’re faking. These people don’t bother to pick up a book or even Google it, to learn about Lyme disease.

This disease has taken a lot away from me. I’m not always able to go out with friends, not able to stuff my face with doughnuts or ice cream, because sugar is not good for patients taking antibiotics, and countless other things. It’s just plain useless to list them all. The smile we try to put on our faces and all the laughing we try to do, despite the pain, makes others think they’re completely right and, that we just love the attention we get from being ill. I don’t enjoy this. None of us do. But… believe it or not, there’s a way out of this and that’s patience; patience and a heck of a lot of hope. Because we all know it’s easier to give up, some see no sense in trying to “hang on” or “hope for the best” since its challenging to keep trying to get better. But here’s something I have found to be true: either you can cower under a rock and wait for the storm to pass, or you learn to dance in the rain.